Stephanie Smith


I’m Steph, and among other things, the most important role in my life is being Mum to twins, Jake and Ella who are twelve. Jake has Dravet Syndrome which has been a life-altering experience. As a family we have experienced years of navigating the ups, downs, adventures and misadventures that will be familiar to all families living with Dravet Syndrome, and other families whose children have additional needs. 

After years of battling the system for Jake and witnessing all the challenges in place not just for families caring for someone living with Dravet Syndrome but for other families with children with additional needs, my focus is to look at how I can help others advocate for themselves and their children. 

I have always deeply respected Dravet Syndrome UK and all the incredible team that work tirelessly in everything they do for the families. From the conferences and family gatherings to the medical research and online support, the charity has played a huge part in my family’s life. I’m so pleased to be a Trustee. It’s incredibly rewarding to have the opportunity to join the charity on their mission to improve the lives of all families affected by Dravet Syndrome.

I’ve had a varied career including working as a professional singer, a senior carer, in the hospitality industry and I’m a qualified primary school teacher. In more recent years, I have been managing three businesses with my husband Wayne including a power washing company, composite decking firm and a facilitation management and cleaning company. It has allowed me to work hours that suit my chaotic family life and taught me new skills.